Autism, Vaccines, and Community: Straight Talk with Seth Mnookin

Two things that the anti-vaccine movement offers to parents of kids with Autism Spectrum Disorder that the pro-vaccine forces generally don’t, Seth Mnookin says, are answers and a supportive community.

As the author of The Panic Virus, a compelling history of the misguided rebellion against one of the most significant medical breakthroughs of the 20th century, Mnookin is acutely aware that no reputable study has linked vaccines — or mercury-based preservatives like thimerosal — to autism in children. On the contrary, the many researchers who have looked for such a link have failed to find one. The alleged “answers” offered by the anti-vaccine community are often illusory, he points out.

But for parents struggling with their child’s diagnosis and disability, a network of people eager to listen to fears and practical concerns about raising a kid on the spectrum can help relieve profound feelings of isolation.

The Panic Virus is a must-read for anyone interested in how rumors, conspiracy theories, and misinformation can drown out the cautious voices of evidence-based medicine in the age of he said/she said media, when “safe vaccine” advocate Jenny McCarthy touts medical expertise earned at “the University of Google.”

Chronicling the events following gastroenterologist Andrew Wakefield’s now-infamous 1998 press conference in London implicating the MMR vaccine — based on a 12-case series that has been retracted by the editors of The Lancet and branded “an elaborate fraud” by the British Medical Journal — Mnookin brings to light the fabrications that ignited a global firestorm of fear about vaccines.

Mnookin’s book is scathing in its condemnation of the media’s failure to promptly scrutinize Wakefield’s unethical research methods and blatant conflicts of interest, including a patent filing for an alternate measles vaccine formulation months before announcing the results of his study. For a long time, Wakefield successfully deflected criticism from his peers by presenting himself as an embattled visionary — a hero putting himself on the line for parents of autistic kids when heroes were desperately needed.

One of the reasons that Wakefield was able to pull this off is that the history of vaccine development is more troubled than some anti-“anti-vaxxers” are eager to admit. To Mnookin’s credit, he doesn’t whitewash this complex and occasionally shameful history. The Panic Virus includes vivid accounts of the Cutter incident, in which several thousand babies were injected with live polio virus by accident, and the 1976 swine-flu debacle, in which hundreds of recipients of a vaccine for an epidemic that never materialized became ill with Guillain-Barré virus, resulting in 25 deaths.

But Mnookin is also very clear on the fact that passing laws to make the decision to vaccinate a matter of individual conscience — as some parents’ groups are demanding — could fatally weaken herd immunityand reopen the door to the kind of mass epidemics that regularly swept the globe until the mid-20th century, killing and maiming millions. To a freshly mutated H1N1 virus in the wild, all unvaccinated kids are in the same community: lunch.

Thankfully, Mnookin writes with compassion of the predicament of parents frustrated by the lack of definitive knowledge about what has caused their son’s or daughter’s disability. Though the genetic basis of most cases of ASD is well established (the author of a major study published last week, Peter White, estimates that there may be “hundreds of genetic pathways” to autism) science has yet been unable to pinpoint the environmental trigger that tips the balance in susceptible children — if, indeed, one exists at all. The fact that identical twins who share the same genes are usually, but not always, “concordant” for ASD leaves open the possibility that some precipitating factor in the environment has eluded detection.

As the father of a 15-month-old boy, Mnookin says he can relate to the feelings of parents who are frightened for their children’s safety — particularly when they’re encouraged by a flood of fear-mongering books like David Kirby’s Evidence of Harmand a steady trickle of lazily unreported news stories that keep Wakefield’s hoax alive.

“It’s tempting to place the blame for the state of affairs squarely on the shoulders of people like Andrew Wakefield,” Mnookin writes. “But that’s the easy way out: Wakefield may have provided the spark, and any number of other charlatans and hucksters might have fanned the flames, but it’s the media that provided — and continues to provide — the fuel for this particular fire.”

I spoke with Mnookin about ways that the media could have been smarter in handling the Wakefield story, why recent attacks on the integrity of science and scientists pose a major threat to public health, and how the “autism community” — often portrayed in the press as a monolithic group of enraged Jenny McCarthyites — is a more diverse and open-minded group than stereotypes suggest.

Steve Silberman: Was there a moment in your reporting when you could relate to the fear that some parents feel about vaccines, despite multiple studies showing that vaccines and the mercury-based preservative thimerosal do not cause autism?

Seth Mnookin: I felt it viscerally when my son got sick with croup, which makes infants gasp for breath and sound like they’re suffocating. We were up all night in the bathroom with our son, running the shower with the window open. The next morning, we called the doctor’s office. They said they’d get back to us in a half an hour, but they didn’t. We finally got an appointment and a prescription, but they wrote it wrong — which we only figured out after we filled it. By then, the doctor’s office was closed again.

They told us the prescription was for three doses, but the total amount was for less than one. So we didn’t know which figure they’d gotten wrong. We were trying to get in touch with the doctor after hours, while trying to look up the proper dose for my son’s weight. I did everything I was supposed to do, but I just had this moment like, “Doctors just go about their business — they don’t give a shit about what we’re going through! My kid sounds like he’s choking to death!”

Obviously, croup is not chronic. It doesn’t even last a week. I’m certainly not comparing it to autism. But I did feel like, “How can I trust that the doctor is going to do the right thing tomorrow?” I knew I was being irrational. Even doctors are human and make mistakes. But that was the moment that I felt the anger some parents are going through, particularly those who have kids on the severe end of the spectrum. Doctors basically tell them, “We have no idea what we can do to help your child.”

I think that’s what makes the anti-vaccine movement appealing to a lot of people. Tying autism to vaccines is almost secondary to “Here’s this community that holds out the possibility of answers to all the questions I’ve been wanting answers for.”

Silberman: For many parents, having an autistic kid can feel like a lonely journey. They have to fight for access to any support system they can get for their family, and it’s getting even harder in an age when social services and special-ed programs are coming under fire in the name of fiscal responsibility.

Mnookin: A huge thing for parents in the anti-vaccine movement is the emotional support. The talk of cures and biomedical interventions is almost secondary to the feeling of connectedness with other parents. A lot of the appeal of the community is just being able to talk to people who can relate to what you’ve been through.

Mnookin: Well, that’s the age when kids get a lot of their shots. But it’s more than that. Let’s say you’re a parent — one of those parents who wants your kid to become president or an astronaut someday. When your kid is very young and still a blank slate, you can indulge that fantasy to the hilt. But by the time they’re a teenager, you probably have a good idea that they’re not going to be an astronaut. They have their own personality by then. In our culture, there’s so much grafting of parental hopes, ambitions, and aspirations onto children. Because autism is diagnosed at a time when kids are still blank slates, it can be especially heartbreaking for parents, and it’s very unsatisfying for them not to be able to say that it’s caused by A, B, or C.

Silberman: Do you think that if Wakefield published his Lancet paper today, it would have the same effect? Sometimes I think that if he was making his claims about the MMR vaccine now, someone with a science or medical blog [like Ed Yong, Ivan Oransky, PalMD, or Marya Zilberberg— S.S.] would quickly notice that the study doesn’t provide adequate support for his sweeping claims, and the rest of the story would not unfold in the ways that it did. Other times I’m not sure, because the world of information consumers is much more polarized now than it was in 1998, thanks to partisan propaganda operations like Fox posing as news organizations. As journalists, what kind of resources could we build now to ensure that blockbuster medical claims based on junk science don’t snowball into huge problems for society?

Mnookin: I’ve talked to some of the reporters who covered the Wakefield study for the daily papers at the time, and they justified their actions by saying “Well, we didn’t know all the things we know today about his conflict of interest and his patent…”

That’s bullshit. What the story should have been was that this researcher was making a recommendation based on a 12-person study that relied on parents’ post facto recollections. That seems completely outrageous to me. It’s not only Science Online bloggers or journalists with science backgrounds who should be able to recognize that for what it is.

Why didn’t anyone just stand up and say, “This is absolutely preposterous!” All those newsroom excuses — you’ve got to “cover the controversy,” “if it bleeds it leads” — whatever! It seems to me like it was controversial enough to have some doctor go completely off the reservation and make these outrageous claims with huge implications for public health. That’s a good story.

Silberman: Reporters could have mined a different vein of controversy.

Mnookin: Exactly, from the get-go. And it’s not like they would have had to go back to their desks and start reading through a decade of virology papers. Someone at the press conference could have simply said, “What are you talking about? This study is like 12 kids. You’re basing your conclusions on what the parents said happened years earlier? That’s crazy.” There might have been a huge amount of blowback that there just wasn’t at the time. I go back and forth about being optimistic or pessimistic about the power of online corrective mechanisms in place when you have a scare story really take off…

Silberman: Bloggers and other media watchdogs don’t seem to be very effective in limiting the impact on public opinion of the anti-scientific nonsense of climate-change deniers.

Fox hypes the faux “ClimateGate” scandal

Mnookin: Yeah, exactly. And climate change is something for which we have a lot of tangible evidence. By 1998, most people had no memories of kids dying of whooping cough or of a measles epidemic quarantining an entire neighborhood. Everyone knows now that Wakefield study was full of crap, and still so many parents — including my liberal neighbors in Park Slope — are like, “I don’t know. Vaccines just make me nervous.”

Silberman: What was it about the culture of the historical era that we grew up in that has made it so easy for parents to believe that pharmaceutical companies, government agencies, doctors, and the press are all colluding to cover up a massive scandal about autism and vaccines?

Mnookin: Reading about things like the Salk vaccine field trial when I was writing The Panic Virus, I remembered that more people knew about what Salk was up to than knew Eisenhower’s full name. Medicine and science were the two most esteemed professions. But what a huge, huge pendulum swing there has been since then, from our parents’ generation to our generation.

During the Cold War and Cuban missile crisis, science went from being a force for good to something much, much more ambiguous. The same thing has happened with pharmaceuticals. There’s a lot of fear now because of the medicalization of everyday conditions, the Vioxx recall, and all sorts of drugs and devices that turned out not to be adequately tested, or were rushed through the approval process. That’s so different from what people’s feelings were when everything was like, “Hey, penicillin! Now we can save the lives of another 30 million people.”

Silberman: Magic bullets.

Mnookin: Right, one magic bullet after another for the first half of the 20th Century. No wonder they thought they’d have a cure for cancer in ten years. And on top of that, political institutions are no longer given the same deference. It wasn’t just Watergate. We all know what Kennedy was doing in the White House, but we didn’t actually have to read stories in the paper about him getting blowjobs. Instead of putting people on pedestals, now we tear them down. This has been an enormous cultural shift.

Silberman: There’s been a skilfully orchestrated campaign by the right wing to not just marginalize the whole concept of expertise and authority, but to demonize it. Their corporate masters want no accountability or social responsibility whatsoever. So the EPA is bad, climate scientists are bad, environmentalists are bad, college professors are bad, schoolteachers are bad, unions are bad — even lay people who care about science are bad, another “partisan special interest group.”

Mnookin: Yes. In the days of the Kennedy administration, the word intellectual was not a slur the way that it is now. Now the whole idea is that to be trained in something, to really know about a subject, to have specialized expertise in a particular field — that’s “elitist.”

Mnookin: I can’t tell you how many times I’ve been accused of being a shill for Big Pharma. Depending on how conniving people think I am, I’m either naive and have been co-opted, or I’m being paid off — Merck is supposedly wiring money directly to my bank account.

Silberman: What’s the most surprising reaction you’ve gotten to The Panic Virus?

Mnookin: Thus far, the reactions I’ve gotten from people who have some direct personal connection to autism have been one-for-one: people who hope I die, and people who are very grateful that someone has written something like this that makes clear that the entire autism community is not fixated on vaccines. I expected the reaction to be much more heavily weighted toward the negative, because people are more likely to write when they’re furious than when they’re pleasantly surprised. So I think it’s likely that the reaction is much more positive than I feared. I don’t think that says anything about my book, it just says that many people’s perceptions of the “autism community” as a monolithic entity are very skewed.

Silberman: You mentioned in a recent interview that the manuscript of your book was originally twice as long. Are there any stories that you wish you hadn’t taken out?

Mnookin: Yeah, yeah. I had a whole section about her and this guy in Canada who’s doing similar studies. Just the enormous implications of the ability to implant false memories — across all areas of our lives, all the implications in terms of how we think about ourselves, and about our experiences.

Silberman: How is that relevant to vaccines?

Mnookin: Getting back to the Wakefield study: when you’re relying on after-the-fact recollections, and those are being gathered in interviews with someone saying Did this happen at this time? or Did this happen in this way? if the person being interviewed is getting subtle cues that the person asking the questions wants a certain answer, it’s much, much easier to have that answer seem like the right one to that person unconsciously.

That’s what struck me about the emotional connectedness of some of these autism conferences — you have the phenomenon of people getting together and discussing similar experiences and saying, “Is this how you remember things?” Not for any nefarious reasons, just sharing their experiences. So I wanted to get that in. But I felt like the book ran the risk of just becoming too big and unwieldy. It started to feel like a bunch of chapters in a textbook instead of a coherent narrative. A writer more talented than I am might have been able to pull it off.

Well, in the lab most stuff has thimerosal and fortunately nobody has turned autist, at least no-more than a regular researcher hehe.
Research has it’s limits so I’m not going to rule out or not the possible induction of Austism by thimerosal.
The fact that there are posibly several and multivariate causes for autisms and that about 5% populiation seem to be allergic to thimerosal doesn’t help reach an agreement. If you think that allergy leads to inflamation and this to cell profileration while autisms is linked to some brain parts overgrowth it even makes some remote possible theoretical sense thimerosal induction of autism. But how microglia reacts to thimerosal I bet is completely unknown.

To find funding and research sources please check the non-profit Aging Portfolio.

The FDA recommended in March that doctors temporarily suspend use of GSK’s Rotarix vaccine after an independent lab using new technology detected PCV1 DNA in the rotavirus vaccine given to infants 2 to 6 months of age.

Isn’t it only supposed to have Reoviridae in it? Why is it necessary to put the DNA from both PCV1 and PCV2. PCV2 is an aggressive virus that causes immune suppression, wasting disease and death in baby pigs into a vaccine for humans? How did this happen in two separate competing companies? Hmmm?

or the fact that a well developed country Japan banned the MMR because 1.8 million children had been given two types of MMR and a record number developed non-viral meningitis and other adverse reactions.

The Japanese government realised there was a problem with MMR soon after its introduction in April 1989 when vaccination was compulsory. Parents who refused had to pay a small fine.

An analysis of vaccinations over a three-month period showed one in every 900 children was experiencing problems. This was over 2,000 times higher than the expected rate of one child in every 100,000 to 200,000.
Expected rate…says it all.

The British Department of Health said Japan had used a type of MMR which included a strain of mumps vaccine that had particular problems and was discontinued in the UK because of safety concerns. (shouldn’t this have been tested better before being unleashed on the public?)

I realize that Jenny McCarthy might not be qualified to discuss autism, but Hannah Poling’s father, Dr. Jon Poling, is a neurologist. Within 48 hours after receiving nine routinely administered childhood vaccines in July 2000, the girl’s health rapidly declined. His daughter stopped eating, failed to respond to verbal stimuli and became prone to episodes of screaming and high fever. More disturbing behavior followed, including staring at lights, running in circles, looking at fans — all symptoms of autism.

“We knew that Hanna’s beautiful, inquisitive mind wasn’t coming back,” said Dr. Poling, who gave up his job at Johns Hopkins University in Baltimore for private practice, which offered him more time with this family.

He noted that nearly 5,000 other autism claims are pending in the court, which was set up in the 1980s to pay for vaccine-related injuries.

So if they don’t cause autism and they are so safe, please explain to me why there is a court specifically for vaccine-related injuries? I’m just curious.

Bottom line. While vaccines have saved many people, vaccines are not as safe as they could be. They need much stricter regulation and far better testing. Especially when they are made by for profit companies who are publicly held, trade on stock markets, and have stockholders, you can expect them to try and maximize profits which means that we could have much safer vaccines but they cost more, so we don’t.

I must take issue with the statement that very young children are “blank slates” and older ones aren’t. I suggest you read “The Blank Slate” by Steven Pinker. Children are never blank slates. They are born with personalities, talents, and temperaments that modify within a certain range in response to experience. Your scientific credentials are marred by such a naive point of view.

Surely Seth was not insisting that chldren are “blank slates” in the Pinker sense. As a father and a science writer, Seth obviously knows that kids come into the world with certain predispositions and traits. He was talking about the experience of parents before they know who their children are.

I still believe that term is emotionally charged. An astonishing number of people do think kids are blank slates, and that they can make them musical by playing them Bach, or athletes by forcing them into sports. Our culture is saturated with the notion that parents form their kids like clay. I believe it’s detrimental to the kids and sets parents up for a massive fear of failure should their kids not rise to expectations, or worse yet, fail.

I want to say I do not stand on the same side with you Mr Silberman with Wakefield or the Vaccine Issue. If you are interested in why please feel free to read my hubpages.com page as there are many things that I think will interest you.

HOWEVER,

Very well done. I have to say that you have shown many angles that DO indeed need to be addressed and how theories come about through media, rumors and misinterpreted findings etc are important because its about truth in the end. To get to the truth of any issue; one must educate themself and it isn’t by listening to what someone tells you is the facts its in finding them out for yourself, to validate the data. I have extensively researched vaccines, starting out completely neutral and I found my own way. I am an educated person, have valid sources, intelligent community’s…and I may not support your side of the Wakefield or Autism debate nor others for that matter; but I do respect your work and especially this article and commend you for your work. No matter what you impact the community by striving to find truth and that is ultimately what is important.

Just a note to individuals levying what I consider to be unjustified criticism of Mr. Silberman: you’ll be hard-pressed to find a top-tier US science writer who cares more about the causes of autism and advocates for people who have a diagnosis of autism and their families. One might be better served by engaging with Mr. Silberman on common ground rather than attacking him falsely with flawed or cherry-picked data.

Thanks, David, I appreciate it. I noticed that the moderator of the Age of Autism fan page on Facebook riled up a bunch of people and sent them over here to make hostile comments, seemingly unaware that I’ve been writing regularly about the struggles of autistic people and their families since 2001, including on this blog. Not sure how that kind of character assassination helps their goals, but luckily, one of the mothers involved in the group, who I met years ago, reached out to me in email, and we’ve been having very productive private conversations.

Could someone please tell me which study was made up of several thousand fully vaccinated children and several thousand unvaccinated children? How long did it monitor the children? Were the criteria changed in the middle of the study? How many children were dropped from the study and why? How many children were added to the study and why?
Wouldn’t that solve this issue once and for all?

Hi, just a small correction. Guillain-Barre, that showed up after the 1976 flu vaccination, is a syndrome, not a virus. It’s mediated by autoimmune attack on peripheral nerve myelin. It’s often post-infectious (usually bacterial–in this case it’s not obvious, but could have been bacterial contamination of vaccine), but its etiology is not entirely clear.

Thanks for writing this; I appreciated your thoroughness and objectivity around this issue.

1. Always assume those who disagree with you are maniacal monsters who wish to cause as much harm as possible to the human race.

2. When confronted with research that goes against your current line of thinking, reject it immediately as baseless and flawed or respond to any points to which you have no answer with insults or threats.

3. It is even better to ignore the research itself and find as many character flaws in the researcher. You’re gold if you can dig up an embarrassing incident from the researcher’s past – try for a silly looking high school photo or get comments from an ex partner. (because only people you disagree with have ever done or said anything silly, right?)

4. Only drug companies can do non biased research that have a clean record as far as fudging data, concealing flawed data and avoiding conflicts of interest. Research by anyone else is flawed, biased and motivated by greed – unless of course you like their conclusions.

5. If one is possibly good, more must be better.

6. Rely heavily on arguments that have gaping holes in them. Herd immunity is perhaps the best example of this.

7. Always assume that those who hold the opposite opinion have never bothered to study the issue.

8. Reject all non drug based health care options as unscientific quackery and refer to natural health care practitioners as “quacks” or “cultists.” After all, health can only be created with drugs, surgery and chemicals – and of course true health will only be achieved with the complete and utter eradication of microorganisms. They have no beneficial purpose anyway.

9. Dismiss the idea that immunity could possibly have something to do with living conditions (eg. good sanitation, regular bathing, clean water, low pollution levels etc.) and lifestyle factors (eg organic food, exercise, toxic avoidance, spinal health, etc.) A very effective strategy is paying a doctor to go on the news and denounce all of these things as unproven nonsense, or at least have him say, “the evidence is sketchy.”

10. If society at large agrees with something, this is the best benchmark for truth. No more scientific discussion is necessary. No society has a history of nearly universally accepting a flawed concept or habit.

11. Remember – only Medical Doctors are smart enough to understand the immune system. You cannot possibly be intelligent enough to discuss it if you don’t have an M.D. (even if you’ve done all the immunology courses that M.D.’s have plus many others and engaged in your own private research.) If your doctor says something he / she MUST be right, because there is no history of doctors ever being wrong.

12. Never EVER consider that other people may choose to live differently than you. Never be OK with that and keep bitching until you become twisted and bitter – or until everyone on earth finally agrees with you…. whichever comes first.

13. If you are a natural health practitioner discussing things with an M.D., be sure to keep your inferiority complex in tact. (Or in some cases that good old superiority complex)

14. The ever growing number of MDs who do not support vaccination obviously have mental problems, they must have gone to an inferior medical school and a have long history of thinking for themselves. (Something to be avoided.) The best thing to do is call every possible media establishment and give them a long list of damaging information about that particular doctor. Also try to imply that they may be sexually deranged or gay. It doesn’t matter if the stories you tell them a real, partially true or completely imagined. You are acting in the greater interests, so the ends justify the means.

15. When confronted with a point in which you have no logical answer – such as the dangerous toxins in vaccines – sidestep the issue. The best two responses (if you choose to answer at all) in this case are:

a. “Those who get damaged from these toxins are an acceptable loss for the greater good.”
b. “Toxins are perfectly safe if administered within vaccines, even though they well and truly above EPA limits.”

16. Refer to all those who disagree with you as “Conspiracy theorists” or “Conspirators.” Try to mention the Illuminati World Domination plans as much as possible.

17. When an outbreak of a disease for which there is a vaccine occurs, get on the news as quickly as possible and loudly blame it on the unvaccinated. Just ignore that the vaccinated people are getting the disease in equal or greater numbers than the unvaccinated.

18. When an unvaccinated person does come down with such a disease, this is proof enough of the efficacy of vaccines.

19. Shout from the rooftops, “If we stop vaccinating, Small Pox will come back with avengence!” (Don’t bother broadcasting that the Small Pox vaccine was ceased in the 1970’s due to toxicity concerns.)

20. If you learned it in university or saw it on the news, it must be true.

21. If you saw it on facebook or twitter, it must be true, but only if it suits your agenda. An even more reliable source is myspace.

22. Rest most of your debate strategy on making the other guy look bad, instead of promoting your own agenda in a positive light. Learn this tactic from a politician if possible (ie – don’t vote for that guy; he’s an idiot! Vote for me!) Remember – people feed off of negativity and fear.

23. When a new flu strain is discovered, alert every news station in the world and use phrases such as, “It COULD mutate”, “Millions will die”, “Pandemic” etc. Test the new vaccine on as few people as possible and recommend it to everyone.

24. It is not possible to be friends with someone who holds the opposite opinion on vaccination. If you have such a friend, spend all your time with them throwing temper tantrums. If this fails to convert them, terminate the friendship.

25. Parents who do the opposite of your decision are irresponsible. Social Services should be called immediately.

26. Spend your time brooding and making yourself angrier by the day over the fact that not everyone is in universal agreement with you. The angrier you get, the more people will listen and agree with you.

a. It is even better to spend your free time taking photos of facebook comments, posting them on your own page and getting your toadies to make disparaging remarks about that person. This gives you a whole new level of credibility and keeps you from doing all those irritating things like spending time with family or hobbies. It will also make you feel tough and powerful.
b. If you have been on the receiving end of all of that, ensure that you play the victim role well, and cease all functional activity until everyone in the world agrees with you and there are no more idiots left on earth.

27. When you run out of arguments, or just can’t answer all those pesky questions from the other side, try to impose rules that the debate must stop. This is in no way a cop out strategy, because after all YOU MUST BE RIGHT, so it is for the greater good that nobody hears the other side of the story.

28. When all else fails, if the other side just won’t accept the infinite wisdom that you have, the time proven strategy of threats, cyber bullying, slander, vandalism and violence are a sure way of shutting the other person up.

But Mnookin is also very clear on the fact that passing laws to make the decision to vaccinate a matter of individual conscience — as some parents’ groups are demanding — could fatally weaken herd immunity and reopen the door to the kind of mass epidemics that regularly swept the globe until the mid-20th century, killing and maiming millions.

I live in America so I really fail to understand the use of the “millions of dead around the globe” nonsense as support for any of your pro-vaccine theories. So confining ourselves to America, what are the illnesses that were killing and maiming in the USA in the mid-20th century? And do we still live in the mid-20th century? Interesting, in order to support your case we have to either live in a different part of the world or we have to live at a different time.

Robert, from June 1917 to December 1920, between 50 to 100 million people — 3 percent of the world’s population — died in a massive flu epidemic that also left behind a generation of paralyzed people (see Oliver Sacks’ “Awakenings” for more on those left behind in its wake). You might look into that history before making light of these epidemics, starting here:

could fatally weaken herd immunity and reopen the door to the kind of mass epidemics

Your use of the 1918 flu in conjunction with a defense of forced herd immunity is interesting. You assume herd immunity could be weakened, yet there is today no herd immunity to the flu (and hence nothing to be weakened and no closed door to be reopened) Nor is there compulsory vaccination of adults, nor even a candidate virus for which a vaccine would have to be developed. Finally I don’t see the connection between everyone having to take the measles vaccine and a severe flu pandemic which happened just once (almost one hundred years ago) in recorded history, under conditions that were both highly unusual as well as possibly contributory to virulence

Sorry, Robert, your repeated use of the word “interesting” as a way to cast vague aspersions on the person you’re disagreeing with, while cherry-picking and spinning responses to suit your argument, is not… interesting. But thanks for stopping by.

The issue of the Spanish Flu epidemic of 1917 to 1920 is not a clear cut argument for the necessity to introduce compulsory mass immunisation to every flu virus that came along.

The reason I say this is simple: that epidemic occurred at the end of a long and brutal war, which left whole populations bankrupt, undernourished and bereaved.
In those circumstances the herd immunity was badly damaged by unusual external circumstances so the response to the virus may have been so dramatic because of those circumstances. That is a cogent argument that has been made many times, and neglected many times by the more vigorously pro vaccine lobby.

As far as I go- I utterly object to any attempt to make vaccines compulsory, and certainly will not knowingly put any more mercury into my body- whatever statistics are produced.

Are you really unfamiliar with air travel, and the passenger who just recently brought measles through several busy airports including the US? Or the folks just back from the Dominican Republic wedding that brought cholera to Boston and New York?

Most vaccine rejectionists hide behind the “pro-safe vaccine” label, and say they are insulted by the anti-vaccine label. But Victor is honest, unlike the folks who run Generation Rescue, SAFE MINDS, NVIC, and the rest.

Hi Anne,
Some of us are already SO DONE with this vaccine nonsense and controversy, that we have had our kids eliminated from any further vaccines, by getting the papers signed and notarized, so that they will not need to undergo any more vaccines. After all I have read in the last 6 years or so, about the lack of longterm testing on vaccines, I am TOTALLY comfortable with avoiding ANY vaccines. Sayonara, to the likes of Mnoonkin(?) !!

Mr. Silberman,
I have a child that has medical papers identifying him as a well behaved, social, showing good eye contact and eats everything that a 18 month old should eat. Including pizza, ice cream and all those things they shouldn’t of course. It identifies him as a healthy and normal child and was written the day we gave him the shots. Not soon after, a few days actually, he was ill stricken with a terrible fever and just slept for days. Over a short period of time, weeks actually, he regressed into a child that no longer speaks, eats graham crackers and throws outrageous fits constantly because of frustration with communication while stemming. And as for a report you should read on how autism does indeed actually precede vaccines, perhaps you should read Hannah Polling’s case by the vaccine court if you can even get a copy of it, you know the one where a spokesman from the CDC comes out after the ruling is unanimous for the Polling family and say’s “Vaccine’s don’t cause Autism!”. And due to this whole Mercury in the vaccines thing, we focus solely on that one issue. I personally work in a lab dealing with blood work and it is actually the fact that your immunoglobulins aren’t fully developed until after the age of two. Yet we inject a perfectly newborn baby with three vaccines when they are first out of the mother’s womb. One of them is actually the hepatitis vaccine. Why, is the baby going to be sharing needles or start sleeping around? No, hardly, it is because the medical community shares one aspect commonly shared with the rest of any organization, tribe or entity that feels as though they need more helpless spokesman that don’t read foreign studies that don’t involve funding from Pfizer or GlaxoSmithKline. You know, the really big one’s that dwarf the smaller less funded and non-biased studies that most in the medical community will avoid reading at the cost of their jobs. Yes, I’m saying Xenophobia affects your community just as bad as any other. Especially considering the amount of money needed to cover such damages. And just for my edification, if your so sure vaccines don’t cause Autism, maybe you can be as confident in answering me this, what does?

Jeremiah, there’s a huge difference between saying “this study, or these studies, do not demonstrate that vaccines cause autism” and saying “vaccines don’t cause autism.” The first kind of statement is scientific; I’m comfortable with talking about particular studies. The second kind of statement is a kind of self-blinding fundamentalism, which I’m not comfortable with at all. I wish you and your child the best.

There is a world of possibility out there, my friend. Scientists are working hard on determining exactly what is autism and what is its cause. As in all things, logic supports the fact that correlation is NOT causation and the inability to determine a cause does NOT mean that vaccines cause autism.

Science tells us to not jump to conclusions. We keep learning. Y’all have jumped to some major conclusions. Good luck with that.

“I certainly plan on writing more about the needs of autistic adults and their families in the future.”

I really appreciate you doing this. One big lesson from autism groups going back to the National Society for Autstic Children (precursor to the ASA) is that people wait too long to advocate for their all too soon to be adult offspring.

The autism community takes this to a whole stranger level with “advocacy” groups actively denying the existence of adults. Boggles the mind.

I am a pediatric occupational therapist and have worked with many, many children with Autism. I feel certain there are genetic components and also environmental stressors. To rule out vaccines as a “stressor” is unwise. I have had many parents from all educational levels tell me their children lost function at a very distinct time, very near their birthdates. Several reported to me their child lost speech or function on the way home from the doctor’s office. I do not advocate not getting immunized, but physician’s should consider the quantity they deliver at one time. It may be the quantity of shots at once, not what type they are getting. I remember my child had 7 shots at one visit. That would be overwhelming to an adult system, let alone a toddler with a genetic predisposition for Autism. Just my 2 cents for what it is worth…

Angela, I appreciate your comment. Please note that, personally speaking, I haven’t said anything about ruling vaccines out as a possible environmental trigger. I’m certainly not calling for the end of research in any area.

“A huge thing for parents in the anti-vaccine movement is the emotional support. The talk of cures and biomedical interventions is almost secondary to the feeling of connectedness with other parents.”

A couple of points need to be made here.

First, the alternative medicine/autism movement is not entirely anti-vaccine. There is a huge overlap, but it isn’t complete.

The anti-vaccine movement has co-opted the alt-med/autism community to a good extent, and this leads to some of the worst parts of alternative medical “treatments” of autism, such as chelation and lupron.

Second, a big draw is the offer of being able to do something, anything. Even if it is only trying new “therapies”. As long as they are promoted as basically harmless, natural…a parent’s natural reaction is to say, “why not? what if they have something and I miss it?”

Unfortunately, the antivaccine portion of the biomed community leads to a seige mentality in many ways–the feeling that the government is lying, the feeling that their ideas are constantly under attack, etc.. This leads to a “big tent” community where all are encouraged to feel safe from the outside onslaught. This means that the alternative medical community refuses to police itself. No therapy is ever really challenged, especially if the practitioner signs on to the antivaccine message.

This is clearly obvious with Wakefield. His lies and ethical lapses are just too obvious for even the most endeared fan to overlook. Certainly people who spend a lot of time “investigating” issues of the autism world, people like Dan Olmsted and Mark Blaxill (who have written their own book of denialist pseudoscience), have zero excuse for not outing Wakefield for what he is. Instead they close ranks.

But this isn’t limited to Wakefield. There are a number of luminaries who present their “science” at conferences like AutismOne. People who challenge, or even have the potential to challenge, the accepted viewpoint are escorted out. The “scientists” at these conferences don’t challenge each other. The presentations are really infomercials to promote the practitioner and the proposed “therapy”.

“Mnookin is acutely aware that no reputable study has linked vaccines — or mercury-based preservatives like thimerosal — to autism in children.”

Oh really? Go to Pubmed (library for the National Institute of Health) right now and type in “autism vaccines”. You will get references to 532 papers. Then screen out the review papers and focus only on papers that generated original data. Of these 350 or so papers, you will find that 3 out of 4 papers support a link between vaccines and autism. Don’t be so lazy Mr. Silberman

Joe, I read autism studies all the time. Since you claim that “3 out of 4” of the papers I’ve been reading support that link, please provide me with, say, three links to specific papers. Thanks so much.

Let’s be honest about the pharmaceutical environment as well. Every “flu” season the TV and radio is blasted with advertisements for the necessity of yet another flu shot- marketed directly to consumers. On top of that we have this hysterical media crying about swine flu, which killed about as many people as the common flu, despite a portended worldwide “pandemic” dominating the airwaves. None of this would be as bad if it weren’t for 2 to 3 companies making billions of dollars in profits directly from the US government to over-provide vaccines. How can one trust in the necessity of polio, if one is lied to about the flu?

Meanwhile, because of market demands, the vaccine against lyme’s disease is no longer available, regardless of geographical region. So outside workers are left with the medical costs of dealing with the disease non-prophylactically. It’s cheaper for the pharmaceutical industry that way, but not for the average environmental consultant or logger or owner of wild lands. It is hard to believe that priorities even approach concern for human health.

So I don’t trust the business practices of industries that market drugs, I doubt that they tell the whole truth of side effects, (journal transparency regulations are still failing) and believing anything that is compelling to their interests becomes difficult. That said, there are diseases worth vaccinating against, but that requires more research than the average under-educated, once bitten, consumer group is willing to commit to.

“…which killed about as many people as the common flu, despite a portended worldwide “pandemic” dominating the airwaves.”

First of all, I find your shrugged shoulders at over 12,000 people killed by H1N1 disgusting.

Secondly, the word “pandemic” simply refers to how many people are getting sick from the disease, and it most certainly was a pandemic. Thankfully it didn’t start off as a highly “virulent” strain, and did not mutate into one, or folks would be wondering why the government didn’t do more.

As much as i agree that vaccines are not a single source causation for Autism, and the elimination of the vaccination program would be disasterous. I would differ in that I feel we are not looking at the evidence in the scientific manner that is called for under these circumstances.

So to say evidence-based medicine sees no connection… I’d agree, if you are looking at the evidence through the methods conceived through the germ theory model of medicine, singular and direct causes, our current framework of science used in medicine.

The problem is, Autism is not a single source disease. So science, which is a set of rules based on assumptions of truth, that truth being single source, isn’t the appropriate science.

Example.

No, vaccines don’t cause Autism, but they can cause Autistic-like dysfunction(which is typically the consequence of the brain being overwhelmed with information) in susceptible individuals if there is not proper innoculation, which by definition is a stress to the immune system, however minor it may seem, it is a stressor, by nature that is what it does.

Should we get rid of vaccines? Absolutely not, if you look at the evidence, ANY stressor can create autistic-dysfunction in susceptible individuals… so getting rid of vaccines, theoretically, could actually cause more autism (not to mention diseases).

That’s the irony of the Autism-Vaccine debate. If you look at the pathways of causation, inflammation, oxidative stress, cytokine responses… these “symptoms” can be caused by any stressor. And stressors work in three ways that are significant for Autism.

Secondly… stress amplifies function and senses, before it “burns” out resources and can create dysfunction. It can IMPROVE function and nothing will be necessarily “wrong” just maladaptive. (see Hormesis)

Which takes us to #3…. stress is an adaptive process, it can upregulate or downregulate systems, it can be intermittent or chronic, it can happen at any time and have many variable but predictable outcomes.

Dr. Offit is an expert on germ theory modeling of medicine. That means he’s an expert in the kind of logic that diseases come from single sources, impact the entire population they come into contact with and is present in everyone that has the disease (Koch’s postulate)… that’s exactly the kind of logic that won’t work for Autism…

Autism is a gene-environment interaction… there are no single causes, including vaccines. So you can’t use the logic, rules or methods of that kind of scientific perspective… we would get misleading and confusing messages and conflicting evidence… which is exactly what we see here.

What is most noticeable in this piece is the fact that autism isn’t a concern. There’s no admission that autism is now at epidemic levels and no official can tell us why it’s happening. Silberman tells us,
“Though the genetic basis of most cases of ASD is well established (the author of a major study published last week, Peter White, estimates that there may be “hundreds of genetic pathways” to autism) science has yet been unable to pinpoint the environmental trigger that tips the balance in susceptible children — if, indeed, one exists at all.”

If autism isn’t important then neither are the thousands of parents who report that their children were normal until they received certain routine vaccinations. Suddenly, they changed. They developed things like seizures, bowel disease, and sleep disorders. Many stopped talking, lost learned skills and were eventually diagnosed with autism. Doctors call it a coincidence at the same time they can’t explain it.

Silberman, Mnookin and everyone else telling us vaccines are safe can’t produce the evidence to back up their claims. Why has there never been an official study comparing the health of fully-vaccinated children with never-vaccinated ones? If never-vaccinated kids have the same health problems as vaccinated kids, especially a one percent autism rate, the proof would be there for all to see.

Until the research is done, there is nothing that will convince the public that the ever-expanding vaccination schedule is safe.

> What is most noticeable in this piece is the fact that autism isn’t a concern.

Not sure where you’re getting that, Anne. Did you actually read it, or just skim?

For example:

“For parents struggling with their child’s diagnosis and disability, a network of people eager to listen to fears and practical concerns about raising a kid on the spectrum can help relieve profound feelings of isolation.”

Or:

“Mnookin writes with compassion of the predicament of parents frustrated by the lack of definitive knowledge about what has caused their son’s or daughter’s disability.”

Or:

“For many parents, having an autistic kid can feel like a lonely journey. They have to fight for access to any support system they can get for their family, and it’s getting even harder in an age when social services and special-ed programs are coming under fire in the name of fiscal responsibility.”

So I’m actually not sure what you’re talking about. If you have any doubts that I find autism to be of deep concern, you can go back through the many postings on this blog about the problems that autistic people and their families face, many of them including statements by autistic people themselves. Or you can go back to my 2001 article “The Geek Syndrome” in Wired, which was one of the first in-depth articles in mainstream media about the rising numbers of diagnoses:http://www.wired.com/wired/archive/9.12/aspergers_pr.html. You may have even read it yourself, a long time ago.

Anybody who reads my work knows that I find autism — and the struggles of autistic people and their families to get the respect, support, and services they deserve — to be of profound, central concern. So I honestly have no idea what you mean when you say “If autism isn’t important.” If I didn’t think autism was important, I wouldn’t have spent more than a decade reporting on it and talking with autistic people and their loved ones.

Autism doesn’t just frustrate parents, it overwhelms. They have children who don’t talk, are in diapers as teenagers and they’re in need of constant care. They have bowel disease and seizures. And no one knows why it happens.

Their parents are terrified about the future. Right now, as Dr. Thomas Insel, head of the NIMH has warned, we need to prepare for a million autistic adults who will be in need of significant care. He also said eighty percent of autistic Americans are under the age of 21.

I wish you’d ask Seth Mnookin why he isn’t advocating for the vaccinated/unvaccinated study
that I wrote about. He’s getting coverage in a lot of places. Why doesn’t he call for the one study that could end this controversy?

> Autism doesn’t just frustrate parents, it overwhelms. They have children who don’t talk, are in diapers as teenagers and they’re in need of constant care. They have bowel disease and seizures.

Well put, Anne, and I completely agree.

> And no one knows why it happens.

The science isn’t a blank slate. Decades of research have told us that autism ISN’T caused by “refrigerator mothers,” for instance. Or that there IS almost certainly a genetic component in many cases — which may interact with an environmental trigger. There is much research left to be done, definitely.

> Their parents are terrified about the future. Right now, as Dr. Thomas Insel, head of the NIMH has warned, we need to prepare for a million autistic adults who will be in need of significant care

Absolutely! I very much wish that more attention was paid to this gravely serious issue. In fact, Anne, I wish more attention was paid to that issue on your website, Age of Autism. I certainly plan on writing more about the needs of autistic adults and their families in the future.

> I wish you’d ask Seth Mnookin why he isn’t advocating for the vaccinated/unvaccinated study that I wrote about.

Feel free to ask him yourself. I’d be curious to see what he would say about the ethics of such a study, and whether an IRB would be likely to approve it.

“Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen”

Those are two very different statements, Anne. Leaving aside the “under 21” and “under 18” mistake (which would be good enough for your fellow blogger Dan Olmsted to mock relentlessly) were you aware that you have changed what you say over time?

80% of the people with a diagnosis of autism are under 21.

80% of autistic Americans are under the age of 21.

Wouldn’t it be a worthwhile goal to find out if these were the same thing? Until then, wouldn’t it be the safe bet to assume that there are a lot of autistic adults who are undiagnosed?

A number of points.
1) As a medical practitioner- the number of my doctor colleagues who have children with autistic spectrum disorders or ADHD is startling ( it is the majority of the children actually- and many of the rest would qualify at “Shadow syndrome” level to borrow Dr John Ratey’s term.)
This is odd- a “genetic disorder ” appearing in the offspring of highly successful individuals- those people who have conqurered the educational pyramid.

That makes NO sense to me at all.

2) As a General Practitioner now 26 years out of Medical School_ I have finally figured out that my patients are very good observers. By and large – when I disbelieve my patients because what they say does not fit with what the “experts” tell me should be going on, I find that in the long run the patients observations prove right, and the expert advice turns out to be questionable.
If there are large numbers of parents observing a change in their child soon after vaccination- then I say we have to assume there is a problem.

Parents are usually better observers of their children than doctors, and I personally no longer have the stomach to stand up and deny the experience of observant and caringbparents who attend closely to their children.

Maybe there is another explanation- but I have heard the story of deterioration soon after vaccination to be very interested in finding out more about what is going on.

Most of the experts in any field arrogantly dismiss any outlying or inconvenient results that clash with their preconceived ideas, and the vaccination, autism debate is no exception.

By Steve Silberman

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As PLOS Senior Social Media & Community Editor, Victoria Costello oversees the organization’s social media efforts and manages the PLOS BLOGS Network. Prior to joining PLOS in 2012, Costello worked as an science journalist and author in the areas of psychology and neuroscience. orcid.org/0000-0002-8715-2896

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